Fun (and NOT so much) with Dementia: One Couple’s Journey with Love and Loss

(Note: the following are excerpts from Rebecca M. Blackwell’s book published in 2022. Here is a link for the full copy).

For most people, my late husband Wayne was an acquired taste. He was the typical attention-seeking class clown; he never met a sexual innuendo or double-entendre he didn’t like. Wayne could be obnoxious, officious, self-centered, and emotionally distant. He was given to hyperbole, half-truths, and/or complete fabrication.

Honestly, it was a lot. Often, even for me. And yet I loved him. I discovered that he was kind, funny, a good listener, and very tender-hearted toward children and vulnerable people.

We met in the early 1970s while we were both studying theatre at the University of Oregon. About 18 months into our college experience, Wayne and his wife divorced. He took it very hard. We became friends and began an extended (but not exclusive) friendship and sexual relationship. Over the course of that time, I fell in love with him. If he had asked me to marry him, I would have said yes in a heartbeat. But he didn’t ask.

After graduation, my life moved on and so did Wayne’s. He developed a career as a master magician, entertainer, and puppeteer in Southern California, Hawaii and eventually Las Vegas. I went to Los Angeles for graduate school, got my MFA, began working, and got married to a wonderful theatre guy. I worked in theatre for a while, but then went into corporate lending, moved to Seattle, WA, and eventually found myself becoming ordained as a Presbyterian minister. (But that’s another story.)

Flash forward to 1999. After eighteen years of marriage, my husband and I divorced. When I sent out a letter to my friends telling them about my divorce and consequent change of address, I included Wayne in the mailing. He called—I think within 10 minutes of opening the letter. He wanted to know how I was doing. He reminded me that I had been there for him during his divorce, and he wanted to be there for me during mine. He called every day for several weeks, keeping in touch, checking in, and talking me through it. Eventually he said, “When you’re ready, I’d like to see you.” Several months later I was ready, and we finally saw each other face to face. After more than two decades apart, we both looked quite different, but we fell right back into our familiar patterns.

We maintained a long-distance relationship for several years, and then, in August of 2003, we were married on board a cruise ship bound for Bermuda. One of my friends said that it was kind of a fairy tale ending. And so, it seemed: we dreamed of a long life together filled with laughter, talking, travel, and making love. But that was not to be. Within twelve years of our wedding, Wayne was diagnosed with dementia and died; I went from bride to caregiver, from Wayne’s beloved wife to “some lady,” and eventually to widow.

When we could, we loved to travel--cruises to Hawaii and Bermuda, trips to Vietnam and India, road trips in the US to Georgia, New York City, Kentucky, and places like Oregon and Kansas, where we had spent time in our younger years. Between the two of us, we could put together an itinerary and packing list and get everything loaded efficiently into the car or van in just three days’ time.

But neither marriage, nor dementia is a “trip.” Both are journeys. A trip is usually self-generated and can be planned. It has an itinerary, specific destinations/stops, and a clear timeframe. You go on a trip and, when it is done, you return home.

Journeys, on the other hand, are much less voluntary and much more ambiguous. You do not always choose to take a journey; often they are thrust upon you (think Odysseus, Abraham and Sarah, Bilbo Baggins). Journeys have no maps or signposts; they are open-ended, the destination is not so clear, and there is not a clear timeline.

But one thing is certain: to go on a journey requires that one leaves home, with no assurance of return. Should you manage to return, you may not be the same person you were when you started.

Actually, neither of us resonated much with the concept of “home” in the traditional sense of place and extended family. Both of us moved a lot over the course of our lifetimes, and that continued after we reunited. So “home” wasn’t really a place… instead, we found home in our vocations, in shared experiences, in memories, and in one another’s arms.

There is an Irish saying, “It is in the shelter of each other that the people live.” Wayne was my “shelter.” Interestingly enough, the Irish word that is translated “shelter” can also mean “shadow/shade” --an apt description of dementia, where memory, personality, and life become less bright and clear and increasingly grow shadowy and fuzzy.

Journal Entry: 13 August 2015

Yesterday, at about 1:30 p.m., Wayne breathed his last.

I kept my hand on his sternum, repeating “I love you, I love you, I love you….” for the last two minutes or so. Knowing that as my voice grew dimmer, his experience of the actual, real LOVE grew louder. Cross-fade …

Journal Entry: 16 August 2015

The Strange Widow--A Curiosity

Her husband just died…. and she’s working the opening night of a show, bouncing along without apparent grief. It’s not seemly, I tell you. Sackcloth and ashes should mark this grief, and yet she smiles with apparent relief.

Blogpost August 17, 2015

GRelIEF

I am an odd widow. I am not weepy, or depressed, or sleepless. I am able to laugh, participate in events, and carry on. I feel like people expect more. More sadness, reclusiveness, angst.

But the loss of a loved one to Alzheimer’s is an odd combination of grief and relief (“grelief”). You lose someone an inch at a time. You grieve the losses an inch at a time. And when it’s finally over, it’s hard to know how to act. On one hand, your loved one is dead.... no longer physically present. On the other hand, it’s as if you and they have been set free. Free to live and dance and let go of the constant anxiety of not doing enough, of split attention between work, home, and loved one. And so, you’re not completely sad, bereft, heartbroken, grieving.

It feels a bit, I don’t know ... unseemly? Inappropriate?

Whatever it is in the eyes of others, it is true for me that the sadness at Wayne’s death is totally mixed with the relief of his long passing. They call this “the long goodbye”, and I think that’s a good description.

About a year ago, I had a memorial service of sorts for Wayne, because that was the point at which we were no longer sharing the same home, the same bed, the same day. And it felt like he had died. This last week, the other shoe finally dropped. Last years’ service helped me span the gap in time with the ability to be present to my beloved. I’m not sure if or how to mark his physical death…. not much inclined to. To be honest, I really just want to crawl in a hole and be done with it all, but others may need the “closure” (especially the staff at Owl’s Roost, who each came to pray, to say goodbye, and to pay their respects as he was dying). Something to ponder.

Blogpost September 9, 2015

The Life and Times of Wayne Alan Sipe

At the end of August, I held a “Celebration of Life” for Wayne at Owls’ Roost. Several of the staff were in attendance, including the Assistant Activities Director (who was wearing Wayne’s Elvis Presley Hawaiian shirt that I gave him), many residents (who were mostly oblivious), and one of my friends from the Woodstock Presbyterian Church. We shared stories, ate ice cream, and watched a slide show of Wayne’s life and times. I shared stories of his growing up, living all over the world with his military family (Germany, Vietnam, Iran, and Rio) as well as his times stateside in Fortville, IN, and Bazine, KS. We looked at his college years at Hays State College, his first marriage and service in VISTA, his time at University of Oregon, where he and I first met, his adventures in Hawaii and Las Vegas between his divorce and our re-connection in 2001, and some of our adventures together.

Wayne Alan Sipe: Master Magician, Master Puppeteer, Entertainer, Ally of Children and Those Whom Society Often Dismisses. He lived and loved to make people smile and to make someone’s day (or night) a little better.

I am truly blessed to have had this man in my life, and it was a privilege to be able to walk him “home.”

Rebecca Blackwell is a retired Presbyterian minister, a recovering banker, and an amateur photographer. She and her 15-year-old toy poodle, Mikey, make their home in Woodstock, GA, where Rebecca is active in the local arts community, and Mikey mostly sleeps.